If you refuse a medicine or treatment, are you labeled noncompliant? Does it matter? Just asking, because I've refused things lots of times in the hospital or to a doctor, "prophylactic" antibiotics because I think they're overused, chemotherapy because I didn't want the side effects, whole brain radiation, pain medicines, etc. The doctors or nurses might spent a few minutes trying to convince me, but in general, as soon as I said I was refusing it, they dropped the subject and went on.
Whatever I was labeled, it didn't seem to affect how I was treated otherwise. I know some may think of me as a difficult patient, but I figure it's my body and I've got to suffer the side effects or problems if I'm in that 3% or 30% risk. Right now I'm refusing the next two treatments for my otherwise fatal brain mets (whole brain radiation that can cause dementia over time and a drug withy nasty daily GI side effects) and asking to skip to the third option, an easy-to-handle drug not quite FDA approved but in final trials, and my insurance balked just a little and my oncologist whines just a little that "You really ought to..." but they're taking it well and setting me up for the trial.
Nategerdney, is it just the label of "noncompliant" that bothers you? Or are you being given other medical treatment differently because of it, such as dropped by a doctor, not offered treatment again because you didn't (couldn't) complete the previous treatment, that kind of thing?
The teasing is horrible and just the opposite of what a genuinely and deservedly anxious patient needs. I've heard nurses talk to other patients in a teasing voice to "cheer them up" I guess when we're all waiting for a procedure, and I cringe, thinking how I used to feel so degraded being talked to that way as a kid--and I was lucky enough not to have health problems when younger, just the usual shots and stuff. But it still took me a while and reassurance from my wife that I would be taken seriously as an adult. And so far I have been, but I'm lucky not to have the hospital trauma that others have had and so am not dealing with that extra layer of anxiety too.
So, after rambling on, guess I'm wondering, like Vickie said, does it matter if there's a noncompliant label, as far as access to other treatment, insurance, etc.? Nategerdney, you've got a legit reason for not completing dialysis that you could explain logically to anybody, and seems that if you ever need to justify the label, you could.
Well, that's the thing - I have explained my reasons, logically, multiple times. I have explained that I am doing all I can. I don't know if I'm considered noncompliant overall at the dialysis center, but certainly a very difficult patient, and when I try to explain the reason for that, I get the usual "I don't want to hear it".
What I go through in dialysis is quite different and harder than usual medicines and treatment I've had to endure. It's just that there were so many, and my feelings not validated for so long that, eventually, I had to say no to a few. Yes, I was called noncompliant for that, but my refusal was a long time coming, and should have been easily predictable.
I don't blame you at all for refusing the brain radiation. It sounds terrifying, and yes, side effects can cause just as many problems as they are meant to solve (and I mean meant to solve, not that they necessarily do solve).
I'm really just tired of docotrs and nurses using the 'noncompliant' label as an excuse to not consider what the patient is going through and trying to deal with. Doctors and nurses and technicians chose their occupation(s), but patients did not choose to be ill. I think many of them forget that, and don't look at the whole picture.
A couple of years ago, I started having terrible backaches and belly pains. I talked to my nephrologist and dietician about
it, and I was told that it was probably lactose/sucrose intolerance. That didn't make any sense, for reasons and evidence that I brought to him. He said "I don't want to hear it", and I tried to adjust my diet to see if it might work. Less than two months later, the intestinal cramps got so bad that I couldn't eat, drink, or even sleep, and severe adhesions from past (many unnecessary) surgeries had been the cause. The doctor never admitted his mistake, and even lied to me that he had thought before it was adhesions.
I don't tolerate crap from people like that anymore. I'm tired of being screwed around with.
Post Edited (nategerdney) : 7/24/2015 10:15:45 AM (GMT-6)